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使用“我的日志”让儿童为侵入性癌症医学治疗做好准备:一项试点研究的初步结果

Preparing Children for Invasive Medical Cancer Treatment with "My Logbook": Preliminary Results of a Pilot Study.

作者信息

Weiler-Wichtl Liesa J, Fohn-Erhold Verena, Rosenmayr Verena, Hansl Rita, Hopfgartner Maximilian, Fries Jonathan, Schneider Carina, Herzog Kristina, Schellenberg Tobias, Schönthaler Barbara, Stember Nicole, Lein-Köhler Iris, Hoffmann Rahel, Kollmann Alina, Salzmann Nicole, Essl Stefanie, Pal-Handl Katharina, Wasinger-Brandweiner Verena, Rinner Sarah, Schubert Lisa, Lange Sandra, Leiss Ulrike

机构信息

Department of Paediatrics and Adolescent Medicine, General Hospital, Medical University of Vienna, Währinger Gürtel 18-20, 1090, Vienna, Austria.

KOKON - Psychosocial and Mental Health in Pediatrics Lab, Rohrbach-Berg, Austria.

出版信息

J Cancer Educ. 2025 Feb;40(1):132-141. doi: 10.1007/s13187-024-02481-2. Epub 2024 Aug 7.

Abstract

Pediatric cancer is one of the most burdensome chronic diseases, necessitating a variety of severe medical interventions. As a result, the disease and its treatment cause numerous acute and long-term medical, psychological, and socioeconomic strains for young patients and their families. Therefore, psychosocial care using evidence-based interventions (EBIs) before, during, and after medical treatments is essential to ensure that patients receive adequate information and to minimize the adverse emotional and psychosocial impacts such as insecurity, fear, and shame. The present study reports the first promising results of applying cancer-specific psychosocial methods developed in the quality improvement project "My Logbook." The four assessed tools are specifically designed to adequately prepare pediatric cancer patients for surgery, chemotherapy, radiotherapy, and stem cell transplantation. Self and proxy ratings were used to assess the patients' subjective knowledge and emotional well-being before and after each intervention session. The results showed that patient-centered interventions using various creative and developmentally adapted methodologies (e.g., psychoeducation, crafting, games) have the potential to effectively enhance patient health literacy (V = 120.5, p < .001, r = 0.33) and well-being as manifested in more positive (slope = 0.121, p = .016) and less negative (slope =  - 0.350, p < .001) or neutral emotions (slope =  - 0.202, p = .002). These findings highlight the importance of developing and implementing psychosocial tools in pediatric oncology to prevent psychological overload and negative emotions and to increase subjective control beliefs, autonomy, and empowerment. Moreover, the effective application and systematic evaluation of evidence-based psychosocial tools can facilitate the establishment of standardized guidelines for psychosocial care in pediatric oncology. Thereby, the final goal is to ensure the quality of care and to use education to increase the quality of life for all pediatric cancer patients.Trial registration: ClinicalTrials.gov Identifier: NCT04474678 (July 17, 2020).

摘要

儿童癌症是最具负担的慢性疾病之一,需要多种严格的医疗干预措施。因此,该疾病及其治疗给年轻患者及其家庭带来了众多急性和长期的医疗、心理及社会经济压力。所以,在医疗治疗前、治疗期间和治疗后采用基于证据的干预措施(EBIs)进行心理社会护理,对于确保患者获得充分信息并将诸如不安全感、恐惧和羞耻等不良情绪及心理社会影响降至最低至关重要。本研究报告了在质量改进项目“My Logbook”中开发的针对癌症的心理社会方法应用的首批有前景的结果。所评估的四种工具是专门为使儿童癌症患者为手术、化疗、放疗和干细胞移植做好充分准备而设计的。在每次干预疗程前后,使用自我评估和代理评估来评估患者的主观知识和情绪健康状况。结果表明,采用各种富有创意且适合患者发育阶段的方法(如心理教育、手工制作、游戏)的以患者为中心的干预措施,有可能有效提高患者的健康素养(V = 120.5,p <.001,r = 0.33),并改善患者的幸福感,具体表现为更积极的情绪(斜率 = 0.121,p =.016)、消极情绪减少(斜率 = -0.350,p <.001)或中性情绪减少(斜率 = -0.202,p =.002)。这些发现凸显了在儿科肿瘤学中开发和实施心理社会工具对于预防心理负担过重和负面情绪以及增强主观控制信念、自主性和赋权的重要性。此外,基于证据的心理社会工具的有效应用和系统评估可以促进儿科肿瘤学心理社会护理标准化指南的制定。从而,最终目标是确保护理质量,并通过教育提高所有儿童癌症患者的生活质量。试验注册:ClinicalTrials.gov标识符:NCT04474678(2020年7月17日)。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/ee1a/11846727/6b94e0df9e10/13187_2024_2481_Fig1_HTML.jpg

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